Content creator, pilot and aviation mechanic Lito Sousa, 59, announced that he had been diagnosed with Creutzfeldt-Jakob Disease (CJD), a rare and advanced neurodegenerative disease that affects the brain.
Widely recognized for his work on the “Aviões e Músicas” channel, Lito announced the condition in a video recorded alongside his wife, Mila Seidl, on August 30, 2026.
The discovery of the disease occurred a few months after the specialist began treatment for prostate cancer.
While going through this process, Lito began to manifest neurological symptoms, including loss of strength and mobility in his left arm, difficulty walking, visual changes and slurred speech.
“His essence, soul and intelligence remain 100% intact. However, his physical body was not, it was severely damaged. Within weeks, he lost crucial movements and was no longer able to walk on his own”, described Mila Seidl.
How Creutzfeldt-Jakob disease affects the body
Creutzfeldt-Jakob Disease (CJD) is caused by a change in the structure of the prion protein, which exists naturally in people’s brains.
In most situations, for reasons still unknown, this protein changes its shape and begins to induce other healthy proteins to adopt the same defective shape, creating a cascade effect.
“We all have this protein, and it plays an important role, including a neuroprotective function”, explained Tuane Vieira, professor at the Institute of Medical Biochemistry at the Federal University of Rio de Janeiro.
When this change occurs in the protein, the resulting clumps cause damage to neurons, leading to rapid brain degeneration.
According to Adalberto Studart, neurologist at the Hospital das Clínicas of the Faculty of Medicine of the University of São Paulo (FMUSP) and the Brazilian Academy of Neurology, the average life expectancy after the appearance of the first symptoms is six months, rarely exceeding eight months.
“Unfortunately, there is no treatment that cures the disease or prolongs life. The current approach focuses on supportive measures to alleviate symptoms and provide quality of life to the patient”, confirmed Studart.
Understand the causes and scenario of the disease in Brazil
Data from the Ministry of Health reveal that Brazil recorded 547 confirmed cases of CJD between 2005 and 2021. The most common modality, which corresponds to 80% to 85% of occurrences, is spontaneous, with no apparent external or genetic factor — exactly the type diagnosed in Lito Sousa.
Approximately 15% of cases are hereditary in origin. Acquired versions of the disease are even less common and may be the result of contamination from medical procedures or from eating meat with bovine spongiform encephalopathy, known as “mad cow disease.” Brazil has no records of CJD transmission through beef consumption.
Today, the high-precision diagnostic test, the RT-QuIC, is carried out academically in the UFRJ laboratory, but is not yet part of the routine tests offered by the Unified Health System (SUS).
Family seeks experimental treatment in the United States
Faced with the absence of conventional treatments, Lito Sousa’s family is seeking access to experimental medicines in the United States, through compassionate use. This permission allows patients with severe illnesses, with no other options, to receive substances that are still in the research phase outside of traditional clinical studies.
Mila Seidl, the influencer’s wife, tried to include him in ongoing international research in the United States and China, however, the studies’ screening protocols prevented his participation after the testing phases began.
“I am not a denialist and I understand the seriousness of the disease. However, doctors informed us that, if we can access the drugs under study, it may be possible to stop the progression of the disease. For this reason, we seek support from institutions such as the Ministry of Health, the National Health Surveillance Agency (Anvisa) and Itamaraty”, explained Mila.
The search for new medicines involves the efforts of scientists such as Sonia Vallabh and Eric Minikel, from the Broad Institute, a partnership between MIT and Harvard. The couple even changed their careers to dedicate themselves to science after Sonia discovered that she had inherited the CJD genetic mutation from her mother, boosting the search for therapies capable of blocking the evolution of the prion protein.
